MVD Procedure

Hi, I’m new to the group. I have both Typical Trigeminal Neuralgia and ATypical Trigeminal Neuralgia along with Glossopharyngeal Neuralgia and TMJ…all on the right side. I’m in pain more often than not. I have had TN for years but due to a lack of insurance I never went to the Dr to seek treatment…that and due to my stubbornness that I feel I can handle everything like superwoman (I’m a Leo). So after years of the shocks from TN getting worse and worse and eventually adding a new symptom of constant throbbing pain, I then started experiencing sharp icepick-like jabs in my ear and along my jawline, near my ear would feel like the bone was chipped or fractured or something.
Long story short, I was finally “officially” diagnosed with all 3 neuralgias last Monday and have been scheduled for MVD on May 24 this year. I have to travel from Kentucky to California which I already did to see Dr. Linskey to get diagnosed. By the way, he’s an international expert on this stuff and is the medical advisor for the Facial Pain Association. I highly highly recommend!!!

Anyhow…I’m scared. Any advice? What can I expect afterwards? How quickly can I go back to work? Will I be in pain?

Hello, k

It sounds like you've had quite a time with all of this. Are you a member of our Ben's FRiends TN group as well?

http://www.livingwithtn.org/

Good luck with the treatment in May!

Seenie

Hi KThomas,

There are a lot of discussions on MVD's the benefits and associated risks. If you check out the search box at the very top right hand side of the page and put in MVD you'll find heaps of information. Have a read of Granadam's post MVD Diary discussion at: http://www.livingwithgpn.org/forum/topics/my-6-week-post-mvd-diary?xg_source=activity

This should give you a really good starting point. Please be aware that everyone's experience can be different - Hope this helps :)

Hi KThomas, Welcome to the group. I had MVD surgery 2+ years ago. Did not consider having surgery until the pain and episodes were to much to take any more and I felt after 10 years of dealing with this I had to do something. It was a scary thought but I have been pain free since then and am soo glad I made the decision to go through with it. I started a blog detailing the recovery period and what I experience during that time. The below is a link if you want to check it out. Let me know if you have any questions. Best of luck on your surgery. Kala http://www.livingwithgpn.org/profiles/blogs/surgery-to-make-this-go-away

I don't have any first hand knowledge about MVD, but congrats on actually getting the real diagnosis and treatment plan to move forward. And - on my 35th anniversary, no less. That's got to be auspicious. :-D

I'm going to read this thread after posting this, because there is a chance this is in my future, too. Best of luck with it!

Well, hopefully you recover from your MVD much like I did. They did the operation in Seattle, had me recover for a couple days in the hospital, and then I was on a 3-4 hour flight back home to Alaska. Although I had some issues with nausea the first week, I'm pretty sure that was just the Anesthesia meds. I didn't really have very much pain with the surgery scar & taking care so it wouldn't get infected was super easy, just used Johnson & Johnson Baby Shampoo along with the stuff they gave me to disinfect the area before & after the surgery. The stitches were taken out in the first month or so, and that was that. Now, unfortunately my pain came back, but since your doctors seem to have a pretty good idea of what's going on inside your head, that shouldn't be an issue for you. I wish you all the luck in the world with your MVD & hope that you never have to come to a place like this again. No one should have to experience this condition and the endless frustration that comes with it.

I have bilateral ATN/TN, and just recently started developing symptoms of GPN on my left side. I did have MVD on both sides, and the surgeries were, for the most part, successful. I would be happy to answer any questions you might have.
Christine

Thanks. I still have almost two weeks before my appointment with the neurosurgeon. He is trying me on 300mg of Lyrica (up from 200 that the neurologist had me on) - so far, over two weeks into the month trial, no change, so at this point I'm not expecting it to help. (When I first started, the 150mg helped within a week or so, iirc.) So I am *expecting* he will recommend surgery, but one never knows. However, when he prescribed, he did mention surgery as an option if this doesn't help, so - I am mentally trying to prepare for that. If I get there, I will be back with questions, I'm sure. Like - tell me every detail about it. ;-)

No problem! Good luck with your appointment.